← Return to HCM-ers: Introduce yourself or just say hi

Discussion
Comment receiving replies
@jillie

Hi All, So happy to find you! I'm from Tucson and have been diagnosed locally with asthma for 15 years. I was always very physically active (swam 1 mi/ day) and couldn't understand why in the last few years my SOB kept getting worse and my inhalers provided no relief. At the same time I was a 6 yr caregiver for my late hubby and so whenever I complained about increasing SOB, my Tucson cardiologists wrote it off as caregiver/ death of spouse stress and anxiety. You know: Learn biofeedback. Meditate. Relax. Breathe deeply. Think happy thoughts.
I just went to Mayo Scottsdale for my annual physical and my PCP there had ordered every test known to man when she noticed that I was SOB from just changing into my gown. Echocardiogram findings are HOCM. I drove the 3 hrs back to Tucson in semi-shock. Next week I have lots of appointments, including my 1st bonafide cardiologist consult at Mayo and of course my wrap-up with my PCP. I've been actively researching HCM online and it certainly fits all of my symptoms.
I have seen 2 terrible cardiologists in the past in Tucson (who basically blew me off) and so I want to definitely continue at Mayo. But I have no clue how to live in Tucson and be treated at Scottsdale---it's a 3 hr drive. I have no family here.
Anyway, maybe TMI but I'm so happy to have found you! Thanks for being here!

Jump to this post


Replies to "Hi All, So happy to find you! I'm from Tucson and have been diagnosed locally with..."

Many of us travel to see HCM experts in other places. I travel all the way from Los Angeles to Rochester, MN to be seen at Mayo Clinic. I also have a local cardiologist who consults with my Mayo cardiologist about my treatment. In a perfect world, they will work together to help you get the best care.

Ask your new doc in Scottsdale if they know of a local "associate" in Tucson. They can work together in your care. Another option is to ask your Insurance Co for a list, sometimes its online or in PDF form, but look for cardiologist that is newly minted. They are still in the "interested and learning" phase and eager to work with experts in areas they may be interested in. Usually an email to them (or call) will let you know if there is any interest. Good Luck!

 Hi, I I'm traveling this morning but should be able to respond to your message early afternoon.

Thanks, Mark

Thanks so much/ interesting angle I hadn't thought about: looking for local cardiologist who's still interested in learning & working w experts

Hi @jillie,

Welcome to Mayo Clinic connect; we're so glad you've joined us! Here's a patient and visitor guide from Mayo Clinic that has some great information with links to many resources: https://www.mayoclinic.org/patient-visitor-guide
If you call the AZ campus http://mayocl.in/1mtmR63 they will help plan your visit to make it as efficient as possible. Did you know that they even have free travel services? @gailfaith can tell you more about that.

I'd sincerely encourage you to view the "Visiting Mayo Clinic" group, https://connect.mayoclinic.org/group/traveling-to-mayo-clinic-minnesota/ on Connect; feel free to scroll through the discussions, and join in any conversation that might help answer your questions.

May I ask what the next steps are in your treatment plan, @jillie?

I found there are 2 types of cardiologist - The "know it alls" and the curious.

Hello just received 5 emails from this thread. so Hello

I went back and found my original post here is as you tell from the date I did make it 🙂
Aug 7, 2015 · I have Hypertrophic Obstructive Cardiomyopathy and SAM and a ICD implanted

I have Hypertrophic Obstructive Cardiomyopathy and SAM and a ICD implanted have had the myectomy surgery and have had my mitral valve repaired. after a year went and had a echocardiogram and the MR is back to severe. the first surgery went well but was a couple of days coming off the respirator. the second for the valve repair i spent 11 days intubated in a chemical coma now they want to install a mechanical valve. what do you think my chances are this time.

I had a real fine surgeon young and steady hands

I doubt anyone here could give you chances - But, you have a lot of issues going on. Where and when did you have your surgery? How long between the surgeries? Have you gotten a 2nd opinion? (hopefully from a surgeon & not someone online!)